Please help me understand my positive coeliac test

[BeckyH25]

35 minutes ago, trents said:

Will they be using conscious sedation? If so, you will not be aware of any discomfort and will not remember it even if it happens.

I will be awake throughout it all but with some sedation to ease the anxiety. I’m also scared of needles just to top it all off.

[T burd]

5 hours ago, BeckyH25 said:

I will be awake throughout it all but with some sedation to ease the anxiety. I’m also scared of needles just to top it all off.

Wow I was totally sedated here in the US. Just make sure they biopsy the duodenum bulb and duodenum, not just routine duodenum. 

[BeckyH25]

12 hours ago, T burd said:

Wow I was totally sedated here in the US. Just make sure they biopsy the duodenum bulb and duodenum, not just routine duodenum. 

All done. I’m just coming off the drugs slowly and waiting for a drink 

[trents]

19 minutes ago, BeckyH25 said:

All done. I’m just coming off the drugs slowly and waiting for a drink 

And you even lived to tell about it!

[RMJ]

I hope you get a definitive answer from your biopsies!

[BeckyH25]

4 minutes ago, RMJ said:

I hope you get a definitive answer from your biopsies!

The doc said it all looked healthy but I need to wait for my biopsy results now. Could this mean I don’t have Coeliac Disease? 

[trents]

3 minutes ago, BeckyH25 said:

The doc said it all looked healthy but I need to wait for my biopsy results now. Could this mean I don’t have Coeliac Disease? 

If you aren't positive for celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but is 10x more common. No test for it. It doesn't damage the villi of the small bowel or throw antibodies. Celiac disease must first be ruled out. Same antidote as celiac disease and that is elimination of gluten from the diet.

[BeckyH25]

6 minutes ago, trents said:

If you aren't positive for celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but is 10x more common. No test for it. It doesn't damage the villi of the small bowel or throw antibodies. Celiac disease must first be ruled out. Same antidote as celiac disease and that is elimination of gluten from the diet.

So I could have sensitivity to gluten and need to cut it out of my diet? 
The professor still seems to think it’s celiac disease because of my blood results. 
Surely if my intestines look healthy it can’t be celiac disease?

[trents]

10 minutes ago, BeckyH25 said:

So I could have sensitivity to gluten and need to cut it out of my diet? 
The professor still seems to think it’s celiac disease because of my blood results. 
Surely if my intestines look healthy it can’t be celiac disease?

Or, you caught the celiac disease at an early stage. At the end of the day does it make any difference? You need to eliminate gluten either way.

[BeckyH25]

3 minutes ago, trents said:

Or, you caught the celiac disease at an early stage. At the end of the day does it make any difference? You need to eliminate gluten either way.

I agree I need to eliminate gluten either way but celiac disease is worse so I’d like to know. He said I would need a yearly flu jab and other jabs and tests if celiac disease. I did wonder if I could still have it and have caught it early as I don’t have many symptoms.

[trents]

Why would he need a yearly flu jab? What other tests?

[RMJ]

46 minutes ago, BeckyH25 said:

The doc said it all looked healthy but I need to wait for my biopsy results now. Could this mean I don’t have Coeliac Disease? 

Some doctors have endoscopes with better magnification than others.  If your doctor didn’t have one with excellent magnification, the duodenum could have looked healthy, but biopsies still show celiac disease under the microscope. That is why biopsies are performed. 

[trents]

Also, the damage to the villi can be patchy and is sometimes missed by doctors who don't take samples from various areas including the duodenum bulb.

[BeckyH25]

26 minutes ago, trents said:

Why would he need a yearly flu jab? What other tests?

He said I would need my bloods checking yearly to make sure I wasn’t deficient in anything. A yearly flu jab and every 5 a jab to fight meningitis - that’s if I have do have celiac disease.

[T burd]

On 7/18/2022 at 2:18 PM, BeckyH25 said:

He said I would need my bloods checking yearly to make sure I wasn’t deficient in anything. A yearly flu jab and every 5 a jab to fight meningitis - that’s if I have do have celiac disease.

I never get flu shots… I have heard one biopsied 7 times before they found the damaged spots. Hope you requested the duodenal bulb biopsy. Since mine would have been negative had they not done a sample there. 

[BeckyH25]

On 7/21/2022 at 2:37 PM, T burd said:

I never get flu shots… I have heard one biopsied 7 times before they found the damaged spots. Hope you requested the duodenal bulb biopsy. Since mine would have been negative had they not done a sample there. 

I have had my results back. Can you please help me make sense of them-

Specimen details I. 02 x4 biopsies 2. 01 x4 biopsies
CELLULAR
Address:
D.O.B Sex: Hosp No:
Lab No:
PATHOLOGY
THE GABLES, HAG FARM LS297AB
25/05/1986
F
33564175
22H11001277
  Clinical details
Constipation and bloating. Positive coeliac serology. OGO - normal.
Macro description
A. 4 biopsies, the largest measuring 2 mm. B. 5 biopsies, the largest measuring 3 mm.
    Mieroseopv
A. The biopsy from 02 reveals 4 pieces of duodenal mucosa with and without Brunner's glands, showing normal villous architecture. There is mild increase in intraepitheliallymphocytosis limited to the base of the crypts with reduced numbers towards the tip. No parasites or granulomata are seen.
B. The biopsy from 0 I reveals 5 pieces of duodenal mucosa with and without Brunner's glands. There is partial villous atrophy in places. In other areas the villi are tall. There is moderate diffuse increase in lamina propria cellularity with intraepithelial lymphocytosis. There is no inflammatory activity. No parasites are seen.
Comments
These appearances would be in keeping with coeliac disease in the appropriate clinical setting, although the inflammatory changes are more pronounced in the biopsy from 0 I.
Diagnosis
D2 biopsy - mild intraepitheliallymphocytosis limited to the crypt bases
01 biopsy - duodenitis with intraepitheliallymphocytosis and partial villous atrophy that would be in keeping with coeliac disease in the appropriate clinical setting.

[Tracy414]

I'm not sure what your exact question is, but your biopsy results are consistent with celiac disease. I would interpret these results as confirmation that you do, in fact, have celiac disease and some damage has occurred. 

[trents]

Also, the damage to the villi can be patchy and is sometimes missed by doctors who don't take samples from various areas including the duodenum bulb.

18 minutes ago, Tracy414 said:

I'm not sure what your exact question is, but your biopsy results are consistent with celiac disease. I would interpret these results as confirmation that you do, in fact, have celiac disease and some damage has occurred. 

Ditto. Confirms what the serological testing found. They did not give it a Marsh scale grade but it sounds like you caught it at an early stage of damage, which is good.

Edited July 22, 2022 by trents

[Wheatwacked]

17 minutes ago, BeckyH25 said:

There is partial villous atrophy in places. In other areas the villi are tall.

There's the "patchy" spots that @trents mentioned earlier. 

 

19 minutes ago, BeckyH25 said:

partial villous atrophy that would be in keeping with coeliac disease in the appropriate clinical setting.

English translation: Celiac disease but not my job to call it.

In 2004 my wife came home with a diagnosis of ovarian cancer and said if I got sick I had to move out. I started using Cold-Eeze (zinc glyconate 13.1 mg lozenges) at the slightest sign of a cold. Zinc is an antiviral. I went from 3 colds a year like clockwork to not one in 17 years. In 2020 when I started tracking my daily vitamin and mineral intake I discovered that my zinc intake was 1/2 the RDA.  Since then hardly ever use the lozenges. The lozenges coat the mucous membranes and prevent the virus from breaching the cell walls in nose and mouth protecting from airborne. I have though gotten the Covid vaccine (I.m not stupid) but between the zinc and my high vitamim D (80 ng/ml) the common colds and flu avoid me like the plague.

[BeckyH25]

8 minutes ago, Wheatwacked said:

There's the "patchy" spots that @trents mentioned earlier. 

 

English translation: Celiac disease but not my job to call it.

In 2004 my wife came home with a diagnosis of ovarian cancer and said if I got sick I had to move out. I started using Cold-Eeze (zinc glyconate 13.1 mg lozenges) at the slightest sign of a cold. Zinc is an antiviral. I went from 3 colds a year like clockwork to not one in 17 years. In 2020 when I started tracking my daily vitamin and mineral intake I discovered that my zinc intake was 1/2 the RDA.  Since then hardly ever use the lozenges. The lozenges coat the mucous membranes and prevent the virus from breaching the cell walls in nose and mouth protecting from airborne. I have though gotten the Covid vaccine (I.m not stupid) but between the zinc and my high vitamim D (80 ng/ml) the common colds and flu avoid me like the plague.

Ok so I do have coeliac disease but the damage isn’t bad. If I go on a gluten free diet now will I be fine? Is there anything else I need to do?

[trents]

Supplement with gluten-free B-complex, magnesium glycinate or citrate, and D3.

Eating gluten free is probably going to be more challenging than you imagine. You probably have no idea how and where gluten shows up in everyday food industry products. Eating out at restaurants is the biggest risk as even though you order gluten free food it will likely get cross contaminated by the way they prepare it and handle it. It will likely be cooked in the same pots and pans and on the same grills, stirred, dished and sliced with the same utensils that they are using for their other food that contains gluten. Read all labels. Investigate all your meds and supplements to make sure wheat starch wasn't used as a filler. Don't kiss anyone who has just eaten gluten. It's easy to lower gluten intake but much harder to eliminate it altogether. If you don't eliminate it, the fires of inflammation will continue to smolder and your will delay or prevent healing of the gut. Steel yourself against the social repercussions of going gluten free. That's the hardest part. Here's a primer: 

And here's what you may encounter socially: https://www.celiac.com/celiac-disease/gluten-centric-culture-the-commensality-conundrum-chapter-2-ideologies-in-our-gluten-centric-society-r5576/?tab=comments#comment-21294

Edited July 22, 2022 by trents

[Wheatwacked]

47 minutes ago, BeckyH25 said:

Is there anything else I need to do?

Keep the faith.  

The western diet is inherently not a nutritious one.  7 Nutrient Deficiencies That Are Incredibly Common. The article ignores choline. 

Choline deficiency increases lymphocyte apoptosis and DNA damage in humans   A choline-deficient diet increased DNA damage in humans. Subjects in whom these diets induced liver or muscle dys-function also had higher rates of apoptosis in their peripheral lymphocytes than did subjects who did not develop organ dysfunction. Assessment of DNA damage and apoptosis in lymphocytes appears to be a clinically useful measure in humans (such as those receiving parenteral nutrition) in whom choline deficiency is suspected.

 

[BeckyH25]

2 hours ago, trents said:

Supplement with gluten-free B-complex, magnesium glycinate or citrate, and D3.

Eating gluten free is probably going to be more challenging than you imagine. You probably have no idea how and where gluten shows up in everyday food industry products. Eating out at restaurants is the biggest risk as even though you order gluten free food it will likely get cross contaminated by the way they prepare it and handle it. It will likely be cooked in the same pots and pans and on the same grills, stirred, dished and sliced with the same utensils that they are using for their other food that contains gluten. Read all labels. Investigate all your meds and supplements to make sure wheat starch wasn't used as a filler. Don't kiss anyone who has just eaten gluten. It's easy to lower gluten intake but much harder to eliminate it altogether. If you don't eliminate it, the fires of inflammation will continue to smolder and your will delay or prevent healing of the gut. Steel yourself against the social repercussions of going gluten free. That's the hardest part. Here's a primer: 

And here's what you may encounter socially: https://www.celiac.com/celiac-disease/gluten-centric-culture-the-commensality-conundrum-chapter-2-ideologies-in-our-gluten-centric-society-r5576/?tab=comments#comment-21294

Thank you